Breast cancer and ribociclib

[GLRocc]

I am in my late 60's and was diagnosed with stage 3 breast cancer and had mastectomy. The cancer had not spread. I could not have chemo due to having another condition and concerns about long term effects of one of the components of chemo, plus I was not suitable for radiotherapy. I have been on anastrazole and infusions of Zolenronic acid for a while now and so far and have felt well with minimum side effects. I am about to start taking adjuvant ribociclib, as another preventative measure (for 3 years) and now I'm worried. Having read the 2 A4 pages of side effect (I do realise that side effects differ from person to person) my concerns are how I'm going to cope with day to day life and side effects and how restricted life might become. I live alone and a lot of my social activity is done with walking groups etc. My oncologist says most people cope "quite well" but I would really appreciate hearing other people's experiences of ribociclib and anything which they find makes if easier to cope

[Hidden]

I can’t help on this particular drug. I was diagnosed over ten years ago at your age and had mastectomy, plus adjuvant radio and anastrazole. I found the anastrazole (and it’s cousins which I also tried) hard to take as they cause muscle and joint pain. I’m now off all therapy except pain killers. I’m well and enjoying life

My own doctor is a pain specialist and prescribed Butec patches which very much helped.

You might get some help from MacMillan or one of the other breast cancer charities.

The reason im writing is just to say you have my sympathies and best wishes.

[LeoEucalyptus in reply to Hidden]

Hello GLRocc

You can check my history earlier, suffice to say here that I had a first BC (IDC) in 2008 and a second primary (ILC) in 2022 (aged now 74). Anastrazole for 10 yrs for the the 1st. And exemestane for the 2nd. When I asked my onco in 2023 (after getting enough energy to do some research) why was I not also on immunotherapy eg your ribociclib, given that I was presumably resistant to aromatase inhibitors, her answer was that she believed that I would not cope well with any side effects. I was and am dealing with daily fatigue and have only a lingering issue with her decision but in my heart I know she judged me well. I was a bit of a mental mess with the second diagnosis which happened just as I was about to exchange on my home., then the daily fatigue which has only eased a little

My suggestion would be to say to your onco/doc that you might be willing to try ribo' if they would be willing to adjust the dose of ribociclib should you not be able to cope with the initial dosage. And that you are in charge of determining how long you will trial each dose level. Then you need never be in doubt that you've given it all your best shot so no regrets. I understand such titrating adjustment is possible with immunotherapy but I am not a medico and this suggestion is simply based on my research of reputable sites and my own experience. Also, just an alert that if we decline any treatment, travel insurance companies may get a little tricky.

But do remember, you are never alone.

Onwards and with best wishes! 👍🙂

LeoEucalyptus

[tn12 in reply to LeoEucalyptus]

Hi LeoEucalyptus, thanks for sharing, I hope you are coping well with treatment. I'm curious how you knew you were resistant to AI drugs? Did you test your Estrone and Estrogen serum levels? Thanks

[LeoEucalyptus in reply to tn12]

Hello tn12

My resistance to AIs is presumed.

Why? First, the 8mm benign cyst (as diagnosed by radiologist via u/s in Oct 2021) was then monitored and when it had grown to 10mm by March 2022 it was biopsied...ILC. By my calcs that's a 25% growth in 5 mths so doubling would take 20 mths. A slow grower as confirmed by Ki-67 of <5% and Mitotic Rate of 1.

ILC does'nt usually form a lump as ILC cells lack E-cadherin (sort of velcro) so they don't group together but form threads or sheets, unless the threads get tangled as happened in my case. Hence I found the lump in Sept 2021. It was not detected by my regular mammos nor u/s, even in June 2021, and both of which I had every year since 2008! And the lump was only vaguely visible in a biopsy follow-up breast MRI scan in March 2022. So... after lumpectomy and SLN; re-excision due to positive margins; completion mastectomy due to positive margins; rads due to positive margins...The final extent of the cancer was 11.8 cms or 118mms. T3N0M0. Grade2 Stage2B.

Thus if you calculate by halving backwards, this cancer had most definitely begun while I was still on anastrazole (2008-2018). Ergo resistance must be presumed.

In addition, this second primary was ER +ve/PR -ve (whereas the 2008 IDC was ER/PR +ve). The efficacy of AI exemestane is estimated at some 77% for a double positive, but is only 27% in the absence of PR. So even if the second PBC were not resistant, it is not very amenable to AIs. But as I find my life rather precious so I am taking all that is offered 👍

Re measure of estrogen levels: estrone, estradiol, estriol. I understand here in UK lab tests cannot measure the extremely low levels AIs should cause E1,E2, E3 to reach.

Warm wishes

LeoEucalyptus

[GLRocc in reply to LeoEucalyptus]

Thank you so much for taking the time to reply . Im sorry to hear you have had a difficult time and I hope things improve and that you will cope . My oncologist seems to have a very patient centered approach so Im hopeful that I will be listened to. I want to give it a try but also want to be able to cope with day to day life

[LeoEucalyptus in reply to GLRocc]

Thanks GLRocc,

You're in a good situation indeed, with an onco who will listen to your suggestions and concerns. Do make sure you make them. We get but one bite of this cherry. 👍

All my good wishes with your treatment.

LeoEucalyptus